أفضل بودكاسات Fsh (2024)

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121: On Stage with Actress Madison Ferris: A Look at "All of Me" 33:31

2d ago33:31

33:31

In today’s episode of FSHD Straight Talk, Madison Ferris dives into her latest project, the off-Broadway romantic comedy “All of Me,” which starts today! Madison shares her experiences of bringing diversity to the stage as the first wheelchair user to lead on Broadway. Catch her thoughts on how roles like hers can shift perceptions and open doors i…

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120: A Candid Conversation About Life During and After Diagnosis 59:04

16d ago59:04

59:04

In this episode, FSHD Straight Talk host Tim Hollenback speaks with Trish about life during and after diagnosis. In this candid conversation Trish (last name withheld for privacy) and Tim discuss the impact of physical therapy, the frustrations that PTs often know or do more than PCPs, and additional intricacies and intimacies of living with FSHD. …

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119: FSHD Radio: David Rubin on The Power and Passion of Chapter Program Leadership 53:25

1M ago53:25

53:25

In this episode of Straight Talk, Tim is joined by David Rubin, NYC Chapter Leader. After a successful career in business and accounting, David discusses how he found new passions, and a way to keep busy in retirement, through board service and Chapter Program leadership. If you've heard of Magic for a Cure or participated in a NYC Walk and Roll, y…

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118: Lonwabo Nene on Fitness and Positivity while Living with FSHD 31:29

1M ago31:29

31:29

Tim is joined by Lonwabo Nene, scriptwriter, filmmaker, and FSHD advocate from South Africa. If you've seen his engaging sessions on Feeling Fit (https://youtu.be/NfskqqQx7Rg), you already know Lonwabo has invaluable insights to share! In this episode, he talks about his journey with FSHD, from the struggle for diagnosis to actively managing his sy…

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117: Transforming Disability Representation in the Film Industry: The Making of Good Bad Things 38:14

2M ago38:14

38:14

We’re thrilled to share a conversation with Danny Kurtzman and Shane Stanger, the duo behind Good Bad Things! Their film is currently making waves (and taking home awards!) in the festival circuit for its moving story as well as groundbreaking representation of disability. Danny, the film’s star, is an actor living with FSHD, and the story is inspi…

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116: FSHD Radio: Jane Nemke, Founder of Designs to Thrive 49:53

2M ago49:53

49:53

In this episode, Tim sits down with Jane Nemke, an accredited International Association Color Consultant and the founder of Designs to Thrive. Jane shares her inspiring journey into Universal Design as a means to create flexible and age-friendly living spaces, driven by her personal experience with FSHD. Through the lens of her own experiences and …

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115: FSHD Radio with Marisa Spain 52:59

3M ago52:59

52:59

Join host Tim Hollenback for a special conversation with Marisa Spain. Marisa, known for Disabled in Nature, her YouTube channel and Instagram, discusses living with Early On-Set FSHD, barriers to receiving mobility devices and assistance, and accessibility in nature and outdoor environments. Share your thoughts, or post questions in the comments s…

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114: FSHD Radio: Community Profiles with Chelsea Moeller 44:52

3M ago44:52

44:52

Join host Tim Hollenback and special guest Chelsea Moeller for a discussion of living with FSHD, from diagnosis to trial participation. Tim also teases some updates to FSHD Radio. On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD community living r…

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113: Project Mercury, A Global Effort in FSHD Treatment Delivery 19:59

4M ago19:59

19:59

In this episode, join Tim as we wrap up the year with a profound discussion on the future of FSHD treatment and advocacy. Guest Ken Kahtava, Chief Business Officer of the FSHD Society, delves into Project Mercury, a groundbreaking initiative aiming to revolutionize access to therapies, improve clinical trials, and engage the FSHD community globally…

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112: Community Profiles: Michael Osborne - An FSHD Connection on the Baseball Field 39:36

4M ago39:36

39:36

In this episode, Tim chats with Michael Osborne, a fellow Milwaukeean and baseball coach living with FSHD. Michael and Tim share the story of how they met by chance on the baseball field and what it means to come across another person who understands the experience of having FSHD. Michael, a dad of three and business owner, also shares his diagnosi…

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111: My Cause My Cleats with Emma Weatherley 18:10

5M ago18:10

18:10

FSHD is in the national spotlight! Emma Weatherley, Managing Director of FSHD Global, joins Tim to share exciting news: Michael Dickson of the Seattle Seahawks is raising FSHD awareness. The NFL player has chosen FSHD Global, our Australian counterpart and fellow Project Mercury member, as his nominated charity for the “My Cause My Cleats” campaign…

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110: Thanksgiving Special 1:15:45

5M ago1:15:45

1:15:45

Happy Thanksgiving! We’re so grateful to have the privilege to serve the FSHD community. This special Thanksgiving broadcast is our way of saying thank you to everyone who helps make our community so strong and allows us to keep moving closer toward treatments and a cure.بقلم FSHD Straight Talk

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109: FSHD Radio Show Community Profiles: Donna Russo - Actress, Dancer, Choreographer 50:28

7M ago50:28

50:28

This month, we welcome actress, dancer, and choreographer Donna Russo. A performer with FSHD and Turner Syndrome, Donna has graced the stage in various productions, including Alvin and the Chipmunks and the Magic Camera, as Alvin. Her versatility extends to the world of television and film, where she has left her mark on numerous projects. Notably,…

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108: FSHD Radio Hot off the Press: Mel Hayes of Fulcrum with a REACH Trial Update 11:37

7M ago11:37

11:37

Earlier this month, Fulcrum Therapeutics confirmed the completion of patient enrollment in the Phase 3 REACH clinical trial for losmapimod, a potential groundbreaking therapy for FSHD. Mel Hayes, Chief Operating Officer of Fulcrum sat down with Tim to discuss what this exciting milestone means and fill us in on the latest from Project Mercury. Catc…

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107: FSHD Radio Show Community Profiles: Jenny and Tony Teel, Thriving in an Interabled Marriage 50:28

8M ago50:28

50:28

This month, Tim talks with guests Jenny and Tony Teel! Tony is affected by FSHD, and this dynamic married couple runs a popular YouTube channel where they share valuable information and provide encouragement within the context of their interabled relationship. Subscribe to their YouTube channel at https://www.youtube.com/@jennyandtony Catch our Com…

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106: FSHD Radio Hot off the Press: Max Adler on the LA Walk & Roll 13:29

8M ago13:29

13:29

Max Adler, a long-time friend of the FSHD Society, sits down with Tim to talk about the LA Walk & Roll! Listen to hear what the Walk & Roll means to Max and learn about the exciting things in store for the Los Angeles Walk. Max has a supporting role in Good Bad Things, and the film’s star Danny Kurtzman, who lives with FSHD, and director Shane Stan…

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105: FSHD Radio Show Community Profiles: Ryan Levinson, Sailor & FSHD Voyager 1:01:30

9M ago1:01:30

1:01:30

This month, Tim got the chance to sit down with Ryan Levinson, a world traveler and legend in the FSHD Community. Ryan talks with Tim about sailing around the world, staying disciplined, and how to approach self-defense when you live with FSHD. Don’t miss this motivating conversation! Diagnosed with FSHD as a teenager, Ryan's unwavering determinati…

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104: FSHD Radio Hot off the Press: the 2023 Walk & Roll to Cure FSHD with Beth Johnston 20:25

9M ago20:25

20:25

The 2023 Walk & Roll to Cure FSHD is just around the corner, and Beth Johnston, the FSHD Society's Chief Community Engagement Officer, has all the details you need to know! Listen to hear about what the Walk & Roll is, how to get involved, and what’s new this year. Led entirely by dozens of dedicated volunteers and supported by a small staff, the W…

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103: FSHD Radio Show Community Profiles: with Beverly Weurding of the Wheelchair Dancers Organization 49:36

10M ago49:36

49:36

For this month’s Community Profiles episode, we welcome Beverly Weurding, the visionary behind the Wheelchair Dancers Organization. Diagnosed with Limb Girdle Muscular Dystrophy at the age of 55, Beverly was navigating life as a new wheelchair user at a time when many contemplate retirement. Empowered by her physical therapist’s support, she founde…

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102: FSHD Radio Hot off the Press: IRC 2023 Recap 37:54

10M ago37:54

37:54

You may have seen our updates from Milan last week, but what exactly is the International Research Congress? The FSHD Society’s annual FSHD IRC is the premier global conference focused exclusively on FSHD research. This conference brings together clinicians, researchers, pharmaceutical industry leaders, and scientists to discuss new developments an…

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101: World FSHD Day: Mel Hayes, Fulcrum Therapeutics 11:19

10M ago11:19

11:19

In today’s final episode, Mel Hayes, Chief Operating Officer of Fulcrum Therapeutics, discusses the REACH trial and other Fulcrum updates! We are so grateful for all of today's exceptional guests and our gracious host, Tim Hollenback, for their dedication to the FSHD Community and for raising awareness on #WorldFSHDDay.…

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101: World FSHD Day: Dr. Nizar Saad, Nationwide Children's Hospital 14:03

10M ago14:03

14:03

In our next #WorldFSHDDay episode, Dr. Nizar Saad of Nationwide Children’s Hospital discusses his research and FSHD Lab Day, which is coming up on July 8th. We have one more episode coming up!بقلم FSHD Straight Talk

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101: World FSHD Day: Raj Badiani, FSHD UK 13:39

10M ago13:39

13:39

Next up in our series of #WorldFSHDDay special episodes is Raj Badiani of FSHD UK! Raj discusses the patient experience and FSHD UK’s incredible work towards clinical trial readiness.بقلم FSHD Straight Talk

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101: World FSHD Day: Emma Weatherley, FSHD Global 42:25

10M ago42:25

42:25

Emma Weatherley, Managing Director of FSHD Global chats with Tim from Down Under! Emma has been living with FSHD for years, and she spoke with Tim about Australia’s efforts with FSHD Global and Project Mercury. Stay tuned for more #WorldFSHDDay episodes!بقلم FSHD Straight Talk

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101: World FSHD Day: Dr. Corrie Erasmus, Pediatric Neurologist 15:41

10M ago15:41

15:41

Up next in our special #WorldFSHDDay interviews is Dr. Corrie Erasmus. Dr. Erasmus is a pediatric neurologist at Radboud University Medical Center in the Netherlands. Listen to hear about her research and the crucial importance of studying Pediatric FSHD.بقلم FSHD Straight Talk

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101: World FSHD Day: Jack Gerblick, Board Member & Atlanta Chapter Leader 13:40

10M ago13:40

13:40

Up next for #WorldFSHDDay, Jack Gerblick, FSHD Society board member chats with Tim. A dedicated volunteer who is impacted by FSHD, Jack is also the Community Development & Engagement Committee Chair and the leader of the Atlanta Chapter. Listen to hear about the Atlanta Chapter watch party tonight as the King and Queen buildings are lit orange for …

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101: World FSHD Day: Neil Camarta, FSHD Canada Foundation 14:11

10M ago14:11

14:11

It’s World FSHD Day! In our first special mini-episode of the day, Neil Camarta talks with Tim about the growth of the FSHD Canada Foundation and the future of Project Mercury. Stay tuned for more special episodes!بقلم FSHD Straight Talk

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100: FSHD Radio Show Community Profiles: Lauren "Lolo" Spencer - Actress & Disability Advocate 49:06

11M ago49:06

49:06

We’re thrilled to have Lauren “Lolo” Spencer as our Community Profiles guest this month! Lauren plays Jocelyn on the popular HBO series The Sex Lives of College Girls and is the founder and CEO of Live Solo, a lifestyle brand dedicated to young adults with disabilities who seek independence and self-empowerment. Lauren is a phenomenal actress, mode…

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99: Hot off the Press: Plans for World FSHD Day 2023 9:49

11M ago9:49

9:49

Did you know that June 20th is World FSHD Day? Check out this Hot off the Press episode to learn how to participate and what we have planned for this year! Tim will get you caught up on things like the Orange Slice Selfies campaign, special programming for the FSHD Radio Show, the International Research Congress in Milan, Project Mercury, and more.…

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98: FSHD Radio Show Community Profiles: All About Adoption with Deb Calhoun and Jim & Mary Albert 1:05:31

12M ago1:05:31

1:05:31

Family planning and adoption can be difficult subjects for anyone to navigate, especially in the face of FSHD. In this episode, Deb Calhoun and Jim & Mary Albert discuss the topic of adoption and FSHD, as well as the hurdles involved in parenting while differently abled. We hope you enjoy this insightful conversation about a subject that often does…

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Shadow of the Dragon Queen PM - Episode 10 Part 3 2:55:56

12M ago2:55:56

2:55:56

*** Due to some internet issues on my end, this episode is broken into 3 parts *** ** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://d…

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Shadow of the Dragon Queen PM - Episode 10 Part 2 58:32

12M ago58:32

58:32

*** Due to some internet issues on my end, this episode is broken into 3 parts *** ** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://d…

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Shadow of the Dragon Queen PM - Episode 10 Part 1 26:56

12M ago26:56

26:56

*** Due to some internet issues on my end, this episode is broken into 3 parts *** ** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://d…

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Shadow of the Dragon Queen PM - Episode 9 2:17:29

12M ago2:17:29

2:17:29

** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…

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Shadow of the Dragon Queen PM - Episode 8 3:06:35

12M ago3:06:35

3:06:35

** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…

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Shadow of the Dragon Queen PM - Episode 7 3:04:16

12M ago3:04:16

3:04:16

** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…

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Shadow of the Dragon Queen PM - Episode 6 3:12:10

12M ago3:12:10

3:12:10

** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…

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Shadow of the Dragon Queen PM - Episode 5 3:20:52

12M ago3:20:52

3:20:52

** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…

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Shadow of the Dragon Queen - Episode 11 2:54:19

12M ago2:54:19

2:54:19

** Played via Fantasy Grounds and streamed live Sundays at 9:00 AM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…

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Shadow of the Dragon Queen - Episode 10 1:58:24

12M ago1:58:24

1:58:24

** Played via Fantasy Grounds and streamed live Sundays at 9:00 AM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…

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Shadow of the Dragon Queen - Episode 9 1:58:17

12M ago1:58:17

1:58:17

** Played via Fantasy Grounds and streamed live Sundays at 9:00 AM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…

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97: FSHD Radio Hot off the Press: Amanda Hill on the New Era of Clinical Trials 20:29

12M ago20:29

20:29

April’s Hot off the Press guest is Amanda Hill, Director of Research and Patient Engagement at the FSHD Society. We are entering a new era of clinical trials in FSHD research. This is an exciting time, and Amanda sat down with Tim to explain everything you need to know when considering getting involved in clinical trials. We’d like to hear from you…

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96: Community Profiles with Hip-Hop Artist Apex Frazier 1:00:54

1y ago1:00:54

1:00:54

This month’s community profiles guest is Apex Frazier. Apex is a hip-hop artist living in Southern Ontario who has battled FSHD for the past five years. In this episode, Apex talks with Tim about dealing with the aggressive onset of FSHD while still in high school and how his experiences have shaped his identity as an individual and as a musician. …

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95: FSHD Radio Hot off the Press: Dr. Amy Halseth Answers Your Questions about Avidity’s FORTITUDE Trial 28:58

1y ago28:58

28:58

Have questions about Avidity’s upcoming FORTITUDE trial? This month, our Hot off the Press guest is Amy Halseth, PhD, of Avidity Biosciences. Amy is the Executive Director of Clinical Development and serves as the Program Lead for the company’s FSHD program. Avidity Biosciences has announced its plans to launch FORTITUDE, a Phase 1 / 2 clinical tri…

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94: Community Profiles: Chip Wilson 47:01

1y ago47:01

47:01

This month, we’re honored to have entrepreneur and philanthropist Chip Wilson as our Community Profiles guest! Chip is the founder of Lululemon and has committed $100 million to targeted FSHD research through his mission-driven organization, SOLVE FSHD. In this episode, Chip talks with Tim about living with FSHD and the future of SOLVE FSHD. Catch …

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Shadow of the Dragon Queen PM - Episode 4 3:05:28

1y ago3:05:28

3:05:28

** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…

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Shadow of the Dragon Queen - Episode 8 3:00:48

1y ago3:00:48

3:00:48

** Played via Fantasy Grounds and streamed live Sundays at 9:00 AM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…

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Shadow of the Dragon Queen - Episode 7 2:54:22

1y ago2:54:22

2:54:22

** Played via Fantasy Grounds and streamed live Sundays at 9:00 AM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…

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Shadow of the Dragon Queen PM - Episode 3 2:49:55

1y ago2:49:55

2:49:55

** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…

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Shadow of the Dragon Queen - Episode 6 2:23:46

1y ago2:23:46

2:23:46

** Played via Fantasy Grounds and streamed live Sundays at 9:00 AM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…

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